Alzheimer’s

April 22, 2010

/ barryweber / 2 Comments

April 22, 2010

Two days after the oil from a mile deep British Petroleum well began gushing into the Gulf of Mexico at a rate so voluminous that nobody seemed to have the first idea how to quell it (remember the dumping of old tires and tennis shoes onto the leak?), and two days after a shotgun wielding man (in local Wichita Falls news) dispatched the doorman at a night club then took off for the local Hastings bookstore where he shot and injured seven others in pursuit of a former girlfriend before putting the gun to his own soon-to-be-lifeless self,

Mom died.

She had been wheeled in on her bed to the Serenity Room at the Christian Care Center in the same town where all that gunfire had occurred two nights before- a tastefully furnished, subtly lit room where people living at the Alzheimer’s Unit at the CCC were taken to breathe their last breaths. There were several Bibles in the room and the de rigeur book of Helen Steiner Rice poems (Oh, God, please don’t let anybody read HSR to me as I lay dying. Read to me from Mary Oliver instead, or Rumi, or Rilke, or Hunter Thompson’s Fear and Loathing on the Campaign Trail, which made me laugh harder in 1972 than I have ever laughed before at anything in print, or since. )

I watched her breathe those breaths knowing that she was down to the last thousand or so of them, maybe less. Each breath was a separate, distinct, and instinctual breath now, a gasp- short, shallow, and separated by increasing seconds. At the beginnings of life, our breaths- the first ones- are reluctant ones, forced on us by organs within over which we have no control and which are a damn sight more harsh than the gentle liquid flow of oxygenated blood passed to us through our abdomen in the deep rhythms of our mother’s interior thumping and whooshing heart and lungs.

That  first mother- made music we hear has a great beat, is easy to dance to, and is never forgotten. We’re rarely conscious of it, until those times when it speeds up, misses a beat, or finally crescendos , then stops. Mom’s interior music had now become a pianissimo staccato. As I sat in front of her, about a foot away so she see me clearly, I could  feel  my own breathing beginning to match hers in either an unconsciously sympathetic rhythm or a prevenient rehearsal of my own someday swan song. Or perhaps both.

I thought incongruous thoughts as we breathed in strange tandem:  1. If the whole Gulf bottom rose in a massive methane burp (as some wild pundits were punditing) and engulfed all of the Southern states and Mexico and Cuba in a lethal greenish cloud, Mom would- hallelujah- be spared the burning, choking death the rest of us would suffer. 2. Please stop knocking on the door, Care Center workers, to see if I need anything. No. “I am watching my mom die, what could I possibly be in need of?” I didn’t say, but thought, each of the ten times it happened. 3. If I try to call Robbie, my brother, the kids, what will Mom hear me say to them (on the very off chance that she was still able to put words and thoughts together), and if I left the room and she died she would have died alone, so I went to a mirror in the room and angled it so I could see her even though my back was to her and called Robbie and my brother, the kids could wait.  4. And..

The time we stood on the corner in Akron waiting for the bus and I was holding her hand and her purse strap was in my hand and I thought I’m holding it and she’s holding it and then the bus came and she lifted me to the first step.

The time some young woman came to the front door and wanted a drink of water and I stood peeking around the kitchen doorway and the woman was crying and my mom held her hand even though she didn’t know who this woman was.

The time she fainted and fell under the dining room table after, earlier that day,  having some dental work done. I ran outside and found Dad but my mouth opened and I couldn’t say anything.

The time there was a note on the kitchen table when my brother and I got home from school. It said, “Dave and Denny” and “Dear Boys” but those two greetings had been crossed out and then this one: “My dearest sons” followed by the words “Grandpa died this morning..” and there was more and I can quote every word of it but fifty years later I can still cry remembering the utter poignancy of the words (and am).

The time I handed her one month old grandson to her at the airport.

The time she brought intricately decorated Santa Claus cookies to my fourth grade classroom and Grandma was with her.

The time I fell from the hay mow in Grandpa’s barn and had the air knocked out of me. Some cousin ran to the house and I looked up and saw Mom, Grandma, and Aunt Betty running- running!- to the barn. I remember their hair, their aprons, their dresses, their arms moving in..

almost a dance, a flurry of fast-moving color against the gray shingled house behind them..almost a dance, more like a furious rhythm, a crescendo of communal heartbeats, almost a dance..

like this one in the Serenity Room which came to an end about 10 p.m., just before many people would be watching  the latest news about the book store shootings and the disaster in the Gulf.

I sang “Amazing Grace” to her because I knew there would be – please?- some part of her that remembered, and then the breathing was down to the last three..two…….

one.

Since that night three years ago there have been  two grandchild weddings, and three great grandchildren: Charlotte, Robby, Ike, and another coming in July. A sister has died.

 And there have been many more oil leaks and spills in places all over the Earth.

Bernice Weber, center, with sisters

Bernice Weber, center, with sisters

One year ago, right now: Sitting, Singing, and Watching Mom as the dying finally came to an end

/ barryweber / 1 Comment

It was obvious by the time that Robbie and I got to the Care Center in Wichita Falls that Mom had physically moved to the final level of life before there is nothing left to do, but let go. She was moved to the Serenity Room, a pleasant room, quietly lit and furnished, and set aside from the other occupied rooms of the Center.

After several hours of being there together with her, Robbie left to drive the sixty miles back to Jacksboro, expecting to come back in the early morning. I planned to spend the night with Mom; we both thought, based on the guesses of the hospice nurses, that Mom had probably another twelve hours or so to go.

Inch by inch, synapse by synapse, Mom had begun dying at least eight years before that day. Friends from Ohio would call my brother and me and tell us they were concerned about Bea. Finally, Mom called me in the Spring of 1994 to tell me herself that she thought it was time that she stop driving a car. In itself, that was a great gift; I’d helped several families in the past with the tumultuous decision, sometimes necessarily involving deception, to get the car away from a mentally failing parent. Mom was making that part of the journey easy for us, but since I didn’t want her to change her mind, I flew to Ohio the next day, made arrangements there with her friends to watch over her, and drove the car back to Texas.

Several months later my brother and and me and our families moved Mom out of the house she had lived in for fifty years, five of them alone. It was a time of mourning for a great old homeplace for all of us, and we “left our mark” by burying a box full of momentos in the front yard. My brother buried a baseball bat, and I buried my high school graduation tassle, along with stubs of pencils and tractor tire valves Dad had carried in his pockets and a Christmas brooch mom had been given by an old friend (Mrs. Byers, for those who remember her).

We moved mom to an assisted living center in Alabama, but after two years there she began wandering into other people’s rooms, and could no longer be depended on to turn off the stove, so we moved her to more affordable assisted living apartments near Robbie and me in Texas, where she lived until July of 2009. She spent her days there walking the halls, looking for her hearing aid, and singing to herself in a strange guttural but rhythmic groan which she claimed was old hymns she remembered (“Mom, you’re singing too loud, shhh!” And would shhh for about 15 seconds and then begin again). We’d pick her up and take her to church, to restaurants for lunch, and to our house for gatherings when our children would visit. We tried so many times to help her make cookies or a pie or cakes, but finally gave up when we admitted to ourselves that that great passion of hers had ended. (I have dreamt about her rhubarb pie, and can even make a reasonable facsimile of it, but it is not hers.)

She liked our dogs a lot. (Who wouldn’t?)

But each day more and more of Mom was going away. She would ask about the “nice preacher” at church (me) and she would wonder when her mom (who died in 1990) was coming. She would call me “Ike” (my dad), Robbie was always “Karen” (her other daughter-in-law), and the pictures of six beloved grandchildren on her wall became the pictures of six strangers. She sometimes sat all day by the window looking out at the grass and the trees and the skies and I am grateful her mind moved into that particular mode of rest.

In July of ’09, Mom fell, with a broken hip, and here is where the story takes me into the only episodes of personal regret I have about the end-of-life experiences with Mom:

I gave her over to the “System” which is different, far different than what I call the Way. The Way is the way of the universe, the way of nature, the way of God. It the way that life is affirmed as life is meant to happen- a beginning born of love, a life lived in reflection of that love and other loves, and then a death, when the living/loving part of life is finished. The System, oppositely, has evolved from our human and demented notions of death as an unnatural state of ultimate illness, which is shaped and enhanced by a medical system full of many kind and skilled people, all of whom need paid, and are paid by a digitally-fueled power plant of insurance, Medicare, and- can I get a witness?- greed.

I gave her to the System when I should have had the calm, the sense, and the advice to allow her to step onto the Way. On the way of the Way she would have gone to a hospice, been bedridden, cared for, and allowed to experience the reason that causes poppies to grow on the earth: morphine. There would have needed to be no pain as infection would have set into the broken hip and eventually spread to her body, which, in all likelihood, would then have caused her to die of pneumonia. It would have lasted about a week to ten days. She wouldn’t have known what was happening. Robbie, my brother, Karen, or I would have been with her constantly.

But, she was in the hospital for about seven days instead, during which she twisted, and turned, pulled at her catheters and I.V.s constantly, got angry at me, Robbie for hurting her, trapping her, doing things “my Lord Jesus would never do to anyone!” Ancient religious fear, learned from shouting evangelists as a child, rose in her consciousness like an infection, and broke. It broke through a lifetime of unselfish service service to others, through years of Sunday School teaching with young people who loved her, through countless visits to older, forgotten women in the community, through so many hymns sung around the piano with her mother, Pap, and sisters, through a lifetime lived in the love of God, and it broke my and Robbie’s hearts. “Is the devil doing this to me?”

She went from the hospital to an Alzheimer’s care unit nearby where she lived the rest of life- eight more months. She walked around there, all day, every day, looking for her young brothers and sisters and her mom and dad. She would eat a little, lose more weight, remember almost nothing, walk some more, fall often from her bed near the floor surrounded by pads, poop in her clothes, complain (but kind of nicely) about much, and then the phone call, and the move to the Serenity Room.

Where she was, at last, serene again. For the final eight hours of her life she was awake, on her side, still, and without pain. Her face was no longer confused and I stayed in front of her as much as I could. I knew she was dying and I wanted more than anything for her to be with one who loved her. I talked to her about who was waiting for her, about Dad, Denny, Robbie, Karen, Joshua, Darcy, Sarah, Emily, Lizzie, and Bob (the last grandchild she remembered). I drew pastels of her which are too difficult to look at and I sang to her- “Amazing grace.”

“It’s Ok, Mom, go now. I love you, I love you, we love you. Dad is waiting, Grandma is waiting…go.”

And, one last breath..eyes still open, seeing me, seeing others..and she was gone. Almost exactly a year ago, to the hour as I write this.

Yes, I wish she could know her great-grandaughter Charlotte was born a couple weeks ago and that her great-grandchild in Australia will be born a few weeks from now, and maybe she does know. Charlotte and the still-unnamed child are the Codas to Mom’s life well-lived.

But such is life, and such is death, and she was on the Way once more, as we are on the Way..

One Last Step (surely the final chapters are near?)

/ barryweber / 1 Comment

So, last Saturday morning

after walking up the hill to the red one-room school 1000 times

and up that same hill to the United Brethren Church where she

was baptized

giggled with her sisters

brought her sons who then giggled at Lily Wolf singing off-key

watched her Pap, and then her Mom buried in the nearby graveyard

and after steps back and forth between the kitchen and serving area

at Nick Yanko’s Restaurant and Grill

and after a walk to the judge to be married to Ike

and two more walks from Ike’s car to the Summit County hospital

to give birth

and after walking up and down up and down up and down stairs to

the cellar to wash clothes

to get stuff out of the freezer

to the upstairs to put boys in bed

to sleep

and to sleep herself

and to put those clothes from the cellar, which had hung outside on the line

in appropriate chester drawers and

make beds, then get preserved

pears

peaches

strawberry and raspberry jelly off the shelves and take them downstairs

after she had, months earlier, carried them all upstairs to put on the shelves,

after she had walked around the church teaching Sunday Schools for years,

making Street Fair pies for many more years

going to meetings: garden club, PTA, Secret Sister, Card Club, 4H, Friendly Class,

then up to Jean’s, up to Tommie’s, down to Olive’s, into town,

up to Betty’s, and back to Grandma’s

after walks through the woods- 2 miles a day with her best friend from up on the hill, then over to the barn to give the workers there some cookies,

or the one with a birthday a cake,

and then out to the mailbox (over and over and over) again to mail her sons,

then her grandsons and granddaughters

cookies

candy

more strawberry jelly

and more cookies

and more

and after she walked to where they buried Dad, and back there for all the reasons wives of 50 years go back to see where their husband is lying

and after she walked in that massive house alone for three years,

after she walked in the assisted living home around and around and around the hallways,

then around and around other hallways, looking now in increasing emptiness of thought for her Pap, her brothers Harry or Tom- when are they coming? Where are they?

walking walking walking walking walking

walking

and then,

last Saturday morning,

right after breakfast in the dining room of the Care Center,

there was a

final step.

One Last Step.

And her legs would go no further.. Or the mind which told the legs to “go” stopped

(more likely)

and so those of us who walked with her along parts of that long Walk through Pennsylvania, Ohio, Alabama, and Texas and parts of ten decades

must look back for her (with her as best we can)

remembering what she would remember about that

Walk.

(and now she sits)

Hello? This is Nancy at the Care Center..is this David?

/ barryweber / Leave a comment

This is Nancy ____ at the Care Center, is this David?

yes

David, we’re calling about your mother, you know she fell earlier today..

yes

Well she fell again and there is a cut on her right arm, not a big one but we’ve taped it up.

yes

We think she may have had a stroke which caused her to fall, she’s favoring her right side and her face is drooping a little that way too..right now she is just sitting and is not able to get up and walk like she usually does, you know?

yes

We’re just going to put her to bed for the night and look in on her and then have the Dr. stop by in the morning. We’re almost certain there is no breakage in the hip or the leg, but if you would like we can arrange to have her X-rayed in the morning.

NO

She seems to be in no pain, but we will of course give her something for that if it looks like she is hurting.

yes

mom 3

Do you have any questions?

no

Well if you do you know you may call us anytime.

Yes, thank you, goodbye, thank you very much, I’m sorry I don’t have any questions, I’m out of questions, please don’t mistake my lack of questions with a lack of curiosity, I am just out of questions, there are no more questions in me just question marks with no words in front of them, if I had a question or a thousand questions it would be three years ago when words mattered but now it is only punctuation and silence and I don’t want you to think that because there are no questions that there is no more care but that care doesn’t matter and I can’t stop the love but that doesn’t matter either and I really do thank you again all of you but there is nothing I can do now except tell you to give her pain pills and I will wait for a

period.

 

.

Alzheimers 2010: the Noise

/ barryweber / Leave a comment

It’s been almost fifteen days since I’ve been to the Care Center to see Mom. There are two primary truths about the guilt I experienced while waiting that long between visits:

  1. The guilt was increasing even though seven of those days were spent in Mexico which precluded any possibility of a visit.
  2. The guilt was all self-inflicted. There was not one guilt-laden word, nor a single critically raised eyebrow from anyone aimed at me for missing two weeks of visiting.

I could skip the next month, it turns out, if Mom’s condition today is indicative of what is to come and we know it is of course it is. She wouldn’t even come out of the room. She was waiting “right here until they get done.”

Who, Mom, who are you waiting for?

Shut the door.

No, Mom, leave it open.

(fighting my arms, raising her voice a little) Shut the door!

So we shut it and then she lays down on her bed and the door is pushed open by another woman, about the same age as Mom, dressed in a pink sweat suit, who says she is looking for her children.

They’re not here today, I tell her.

Oh, they’re here (she’s looking in the dresser drawers) they’re goddam hiding because it’s so goddam cold outside and their things are laying everywhere and they’re hiding.

Why don’t you sit down here and we’ll wait for them to get here? (I aim her toward the rocking chair in the room and hold her hand for a minute until she calms down.)

Mmmmrrrnnnnn, Mom is groaning now. It’s kind of a snore, kind of a snarl. Mmmmmmmmrrrrnnnn..

it is part of her breathing, backround racket. And there’s more to come.

The goddam kids never pick their stuff and I have to clean it up..(she is smacking the rocking chair handles) goddam cold outside goddam cold outside, did they tell you they were coming?

Yes.

And- amazingly- at that moment, there is a car in the hallway except it isn’t a car it is a man in a wheelchair making the same kind of car noises a five year old on the kitchen floor makes as he pushes shoes around chair legs..it is a trilling noise, which changes with the gears:

lllllll…LLLLLLL….//////////….llllllllllllllllllll..llllllllllll..lllllllllll

Mmmmmrrmmnnnnn……Mmmmmmmmmrrrrnnnnn

goddamkids are no there andwhenaretheygettinghere goddamit

llll..LLLLLL….lllllll..LLLLL….llllllllllllllll…llllllllllllll

HELP ME! HELP ME! HELP ME! HELP ME! The woman who is always in need of help is hollering now, in her wheelchair, hollering as she does for hours everyday HELP ME! HELP ME! HELP!

Llllllllll…LLLLL….///////..llllllllllllll

Another player, Mom’s roommate, Ethel, is now standing in the doorway looking in at the human cacophony of sound in her room while avoiding the car in the hallway, and she smells. Badly. I can see the stains in the front of her also-pink sweatsuit, and so, giving her as wide a berth as possible I go to find a nurses’ aide because there are things I can’t, won’t do. Near the nurses station there is a woman lying on something like an overstuffed chaise lounge, who sounds EXACTLY like a three month old infant crying. Only she isn’t crying. The nurses aide, seeing my dumbfoundedness, says the woman is imitating her baby girl of many decades ago. Good Lord.

I let Nurses Aide lead the way back so that I may penetrate the Wall of Sound one last time without getting someone’s smell on me, and I bend over and kiss Mom/ Not Mom on the forehead and tell her I’ll be back in a few hours. I don’t know if she hears me or if anyone hears me because her groans (or whatever they are) have resumed, the car in the hallway is spinning doughnuts, the goddam kids are still missing, and HELP is still being sought.

* * *

Someday soon I will write of the saints who call this their workplace.

Saints. If you’ve been reading me for awhile you know it’s a word I use sparingly.

Saints. When I say it, I mean it..\

* * *

I feel no guilt anymore. I feel kind of a nothing. It is time to be gotten through. There’s nothing I can do except wait. That’s all…

a Christmas respite: an episode in the history of Mom’s Alzheimers

/ barryweber / 1 Comment

 

Mom..

It’s another chapter today but in a different place: a doctor’s office- an ob/gyn where it doesn’t matter what the matter is because I, as one of those two who love this woman most in the world, will not allow anymore treatments of anything for anything except pain. If she wanted some Mogen David wine after 40 years of no Mogen David, I’d be on my way to buy some now, and a wine glass, and a linen napkin, here, Mom, sit here and I will pour a glass for you. 2009 was a very good year and if you’re in pain or not, drink all you want.. 

She won’t sit still. “I want to get up I’m tired of sitting,” so she is up and she walks and there is nowhere to walk so it is ok to walk everywhere, and when she’s done walking she can sit down anywhere or lie down in whatever bed is nearby..it is the doing the moving the getting up the sitting the movingmovingmoving steppstepstep which matters, it is her work, her quest, and then she stops and turns around and I catch my breath when she asks anyone nearby, maybe me:

“Where’s my Mother? Where did she go?” 

For the 10,000th time in the last five years I lie, “She went to town to get some groceries.”

And I, and we, are  told again, that “She is the best Mother in the world. She is.”

“Where is she again?” She went town. (10,001)

“When will she be back?” In about 30 minutes. (10,002)

“I can’t sit that long.” We’ll walk around for awhile then..

There is an aide from the Care Center with her who will accompany Mom into the exam room where the doctor will probe. Probe. Does an 84 year old who is not-in-pain, who also has alzheimers and doesn’t know or care that she has some slight vaginal bleeding, really need probed? 

Does a woman who used to bake pies, organize church dinners, and teach high school Sunday School classes and who doesn’t know her mom and her  husband are dead or where she is, or who I am at this exact moment really, really need to be probed? And with what? Nonono..I don’t want to know and please don’t tell me even when it’s over I don’t ever want to know..

She doesn’t want to be probed. She wants (she said it again 10 minutes ago and 2 minutes ago) to go home and go to bed and let God come and get her. She said that and she says that often. Please, God, hear her prayer.

Hear her prayer, please, her and my prayer and Denny’s prayer, and Karen’s and Robbie’s prayer and JoshuaDarcySarahEmilyLizzieBob’s prayer and her sisters’ prayers and her nephews’ and nieces’ prayers too, and let her go home, let her go to bed, and take her. Come get her. One more time, come get her. That’s what she wants. She doesn’t need to be probed anymore.

Amen

Alzheimer’s, Part 1000, another day

/ barryweber / 3 Comments

I’ve not been to Mom’s place for about a week..finally I find her standing in a room (not hers). I find her because of the noises she makes.

What’s the matter with me?
What’s the matter with me?

Mom, look at the birds (tiny birds-thrush?- in a cage we have walked to. Look at the pumpkins (gourds, arranged around the fireplace near the thrush cage).

What’s the matter with me? Are you taking me home?

Mom, you broke your leg, I lie.

What?

You broke your leg, you’re in the hospital, I lie some more.

When are we going home? Tomorrow, I am lying now like I am 12 years old and she smells cigarettes in my hair on my clothes on my breath, No not me, must have been that bum we were talking to down by the creek. I’m coming here tomorrow to take you home.

Everything is a lie now..when?where?who?why?how? And not a single goddam one of the answers matter, it’s only the questions which bubble up through the cloud of her consciousness and she waits for an answer but only for a moment and that moan and groan or whatever that damned sound is that she has been moaning/groaning for ..3 years? Yes, that long, even though three years ago she could still respond to more than one thought for more than a few seconds and think about about some things besides the vague memory of her mom, her husband, her dad, her sons (as little boys, where are they?), her sisters.

HolyMaryMotherofGodprayforussinnersnowandinthehourofourdeathAmen, I pray, though I am not Catholic and know damn well Mary is not listening, but we are dying, right? This IS the hour of our death, yes? Amen.

The woman who hit her last week is the woman who is holding her hand this afternoon as they walk to the where the music playing. Lois is her name, but that matters even less to her in this moment than it does to me. I am grateful mom has contact for awhile with skin, not my own. We need the warmth of skin, and Lois and my mom are holding hands and warming each other’s skin and there- perhaps..searching for spiritual meaning somewhere within this quagmire, this ignoble end to a life- there, perhaps, is the Christ- in the warmth of skin, that is. There, perhaps, is the “I will be with you always” and there, perhaps is the “I am the alpha and omega.”

Perhaps.

Or, let’s be realistic, maybe that’s not it at all and I am reading what I want to read into the little drama,

And one way or the other it doesn’t really matter, does it? I reject the cliches that too many people are too willing to try to placate each other with before tears run too hard and too uncomfortably. (You should know that I find the book of Job to be an abomination) None of these people are learning a thing about working out their salvation with fear and trembling and not a single one of them for a single second during their noise filled, cloudy consciousness filled days, remembers their baptism, but some of them are hollering, Who are you!, and others yell, Where am I?, and another man makes noises like a car, and another woman is peeing in the hall and another is staring at a shoe and another is sleeping in front of the cage where the thrushes live, near the gourds, down the hall from where the music is playing and where Lois has just let go of mom’s hand because because because because

Watching Mom just laying there, looking up, and moaning, and going away..

/ barryweber / Leave a comment

It’s the look of vacancy, of emptiness, where even the emotions of extreme engagement are barely discernible and able to be seen often only the flurry of flailing arms and gentle fists. Mom is “cold get me back to my room when are we going home I’m thirsty I’m cold where are my shoes when are we going home are we back yet?” She groans in gutteral chants, echoes against the emptiness, an almost-manic moaning that is loud then not loud but never stops..

Are we going home now?

Yes, mom, tomorrow

No today

OK today

when is he coming

who?

someone is coming he is bringing something from home

what?

Something I hope he’s ok and didn’t..

MOM! Look at the window!

What?

And for a few minutes again the moans and groans, painless physically, who knows emotionally, or if there is even a spiritually left? There are others, so many others here under one roof, under the same sky, under screwball heaven. There are jams of wheelchairs in the hallways, hollering, cursing, crying, calling. Does anyone know where they are, what day it is, who’s your daddy?

I try to sing something low and slow but she can’t hear. And there is the stink of somebody’s shit in the hallway and here comes the aide to clean it up but still it wafts, in waves it wafts and the moans now groans, perhaps a song perhaps the only way to scream, continue..

and now Mom is up on her elbows, wide awake, but not wanting to leave the room. She has a roommate who I never see- I look in the bathroom to see if she is in there dead, but I have only seen her once and then she was fighting with her nurse, You’re better than me! Leave me alone! And the pictures on her wall show a happy anniversary (50?) with a happy husband and happy children and grandchildren and now I don’t now where she is. I only know this about her: she is not in the bathroom.

There is nothing on mom ‘s walls- we don’t have to prove our love for her to others, that’s been done and if we loaded the walls down with pictures she would see none of them and know none of them- us- her progeny, her issue, her genetic touchstones with eternity, in the near galactic future anyway. Her comprehension extends now (it seems) to water, cold, some pretty colors, “home” (whichever one I don’t know and neither I think does she).

Shit. (the smell and the circumstances) Call it a prayer or call it a curse. They both sound the same. The line in McCarthy’s The Road: “There is no god and we are his prophets.” Or, there is and we are: Look! Look!  This is the way the whole world ends, the whole world ends, not with a bang, but a

whimper….

and claws scuttle across the ocean floor while we lie etherized on the corner of Main Street and Vine waiting for the Christmas Sale at Target or the end of the world whichever comes first. Both will be accompanied by moans this year. And aging cheerleaders in fading, fraying sweaters jump up and down in the twilight of the American empire urging the crowds with no money to find some more and buy some stuff “Duty! Duty! Duty! Gooooooooooo and Groooooooow GNP GNP GNP!”

She lies staring through eyes with no twinkle  at a ceiling where no conjured or suggested dreams are possible. The TV is off and even when it is on it is no more than a light and nothing but noise and there is no music and there is no laughter, maybe never again. Mom! Smile! Laugh! But she doesn’t know who I am or what the words mean or when she is going home, so

Shit.

Again.

It’s cold It’s cold When are they coming? Are they here?

One of the last Alzheimer’s posts; it must be..

/ barryweber / 3 Comments

When Dad died, my brother and I
cleaned the basement,
handing off the chapters of forty years
to cousins who played with us so long ago—
Hide & Seek in those same dark corners
from where we now pulled old tools and
cans of long-dried-up paint.
The dumpster we rented filled quickly with
that stuff Dad thought he would need,
but which he, nor we, never did.

Mom, upstairs, busy remembering in 11 rooms
still filled to bursting with her own and the together life
of her and Dad.
Every kitchen drawer laden with knives, spoons,
measuring cups, spatulas, and tools that we looked at over the years
never knowing what/how/why they were owned by her/ kept by her/
or ever even used by her in the quiet, private preparations
of obscure and intricate recipes involving ham,
or pink cakes with blue icing,
or any of a green-to-red rainbow of jams and jellies.

Even the stairwell between the kitchen and second floor was filled
with cake pans, Jello molds, and trays for everything that she needed
carried, moved, transported from her kitchen
to the tables of others.
(“Is this for here?” we had learned to ask as children, seeing dozens of cookies
cooling on the table after arriving home from school, and learning to deal with
the answer which came too often: “No, these are for church” or some wedding,
or some party, or somebody whose name we didn’t know and didn’t want to
know who was going to pay Mom for all these cookies, leaving my brother and
me with a few broken ones, or none.)

Later, once then twice,
in two years then three years,
we would move and cull more;
then move farther and cull further.
First, it was out of the upstairs,
then down to just three rooms,
then out of the house altogether when Mom
remembered the cakes but not how to make them.

And then she forgot, most of the time, about the cakes themselves.

And here we are now too few and too many years later,
hollering, my brother and I, “Mom! Mom!”
…not so she will know we are home from school,
…not so that she would come and see the pile of blocks we have built ten high
on the linoleum floor of the dining room,
…not so that we can show her the fish we caught
or the grandkids we are bringing home for her and Grandpa to see,
…no.
This time we’re hollering “Mom! Mom!”, first me, then my brother,
we’re hollering “Mom! Mom!” so that she will know that we are beside her
and so that she will know—somehow, please God—through
the defilement of Alzheimers
that she is going
to die

loved.

“Mom! Mom!”
.
.
.
(I’ve written in the past about this journey with my mom:
Aug.25, ’07:
Nov.11, ’07:

Update- A New Year of Alzheimer’s

/ barryweber / 3 Comments

The post below needs an addendum, because things have changed. Not the world, not Mom, not her prognosis. It’s me. Having written what I wrote, I got some advice from someone who’s been through a similar parental illness, and it has made a world of difference. I share it here for two reasons:

1. So you don’t have to worry about me going insane.

2. So, in case someone reading this might be going through a similar situation, you can perhaps benefit from my own mind-shift.

I’ve given lip-service and lip-service only (I now realize) to the fact that Mom will never get better- not in the remainder of her life, not for a single day. There may be moments when her sense of humor or sensory abilities are better than other moments, but- overall- there is a decline in her physical brain and that will continue.

My own frustrations with that situation were born, I know now, from my stubbornness in letting her go. I wanted, if I could, to keep her the way she was, in whatever small ways I thought there were to do that. Thus, I would get upset at her for her continual accusations that staff people in the home are stealing her refrigerator goodies. I’d tear down her hand-written sign of the day, warning them to stop taking stuff, and tell her upsettedly to stop that nonsense!

I’ve been doing that for two months now and it hasn’t helped at all, nor will it ever help at all! Therefore, my advisor suggested, I might try just going along with where my mom’s mind is, instead of trying to push and and pull it back to where I want it to be. And, that attitude has worked for me for three days in a row!

On Wednesday, I put the sign which I had torn off on Tuesday, back up on the refrigerator (as I was filling it with more goodies). “If they take these yogurts, tell me, so I can replace them,” I told her. She was smiling as she promised to do that. So was I.

Her complaining about ears and eyes? “Let’s talk to the Doctor about that the next time we go there,” is my now already-much-practiced response. Instead of trying to prove to her again, to no avail, that we have been to both ear and eye doctors very recently, I’m simply allowing her brain- as it exists this day, in these moments- to be that to which I respond. I’m not trying logic anymore with the mother I used to know, in order to get her step forward from some “hiding place.”

There is no such hiding place, of course. Mom is not making a conscious decision to be suspicious, forgetful, frustrated, or weird. That’s her brain. And there’s not a thing I can do about it other than humoring her, agreeing about everything with her, and keeping her supplied with shelter, food, medications, and my..

daily presence. You read that right- I’ve been there daily for the last three days, and have left each visit in a good mood, not feeling frustrated, and with at least a little hope for myself. I had been losing that, as I knew I was losing her.

So, I’ll be supplying Mom and the entire county (if that’s what she thinks) with snacks for as long as she is able to go the refrigerator and get them. I’ll put more flowers in her room, and more of the halfway-pleasant me back in her life.

I’ll let you know how it continues to go, as a way of saying “thank you” to those who could see what I wasn’t seeing.